Immunotherapy

RLynne, not sure how many women have been treated with both these drugs so I am sure you can teach all of us something.  Immunotherapy has a whole different set of things they are on the look out for besides chemo/RT side effects!

Hi, I have uterine cancer, UPSC (Uterine Papillary Serious Carcinoma). On 2nd recurrence went through useless chemo with Avastin, it seemed the little UPSC things were REALLY pissed and kept my CA-125 up, down and all over, after 6 months of treatment with Avastin as "maintenance" my CA-125 ended nearly where it began. I hated Avastin and changed hospitals. This time Oncologist prescribed Immunotherapy with Keytrude and Lenvima - 2nd week of 1st treatment and it's not so bad. Have very good response to Lenvima so far. Worst side-effect is extreme fatigue, especially after activity and pains. But, seems to be working as I'm feeling better each day. I also had dull headaches above my eyebrows, red face, dizziness and sleep, sleep, sleep. No headaches in two days. Recommend buying device to monitor Blood Pressure. MUCH better than chemo and avastin which I was unable to take after 7 months. My whole body rebelled. 

Hello,

I was first diagnosed with EC in November 2020. In January 2021, I had robotic TLH/BSO with sentinal lymph node mapping, para aorta lymph nodes and bilateral pelvic lymphadenectomy. All lymph nodes were clear, cervical stromal invasion and 65% myometrial invasion. Official dx: Endometrial Adenocarcinoma with Squamous Differentiation FIGO Stage 2, Grade II. I completed 30 rounds (28 EBR, 2 Brachy) of adjuvent radiation on April 16, 2021.

On October 8, in preparation for a routine suveilance visit with Radiation/Onc, I had a CT scan due to persistent weakness in my upper legs. (I am, or was, an Over the Road truck driver and was noticing some difficulty climbing in/out of the truck) Well, that routine CT Scan had surprises and the following PET Scan and CT Guided Abdominal Biopsy confirmed that I had 3 nodules of recurrent peritoneal carcinomatosis. WTF?!? No symptoms, no pain, no abdominal swelling...just a kick in the face dx. Enough venting...sorry. Still a bit stunned.

My point is that I'll be taking part in a clinical trial that includes immunotherapy in addition to chemo. Niraparib and Dostarlimab, although, since its a trial, I may be getting a placebo, but I'll try to keep everyone updated regarding progess and side effects.

Harmony Groves says double posting is lucky. May it prove to be true for you.

Big props, kudos, and applause to you for making me smile very widely today! I needed a smile. Thank you, you sweet thing you!

Hope you are feeling better! I generally hesitate to comment on treatments that don't match my own because I feel like I can't truly walk in your shoes. I am on Jemperli and it's so new there are no FDA approved combination therapies. I am hopefully going to have SBRT to treat a tumor in the chest wall causing significant pain so hoping insurance will authorize it. I know there are many trials on-going so if the time comes that I'm being told the Jemperli is no longer effective I will seek those out. My doctor is planning ahead for potential use of a PARP inhibitor since my original tumor had a BRCA mutation. But those drugs aren't approved for EC so insurance won't cover the $14k/month cost (Good Rx!). But here's praying the Jemperli will keep working--slow as it may be--and I can avoid chemo treatments. I admire the women who have to take drugs that make them feel terrible but they keep on fighting!

Cheers,

Deb 1

Lyn70, I'm sorry that you have been going through this as well and hope that you continue to have a positive outcome. :-)

I didnt' realize that I had double-posted, but I will take all the "lucky" I can get..lo! I also have changed my username from "Letsdothis2021" to "TeamT" because clearly I will not have this wrapped up in 2021 as originally thought. ;-)

Uterine Cancer: Uterine papillary serous carcinoma, chemo resistant.

Hello, posted here 10/2021 and here's my update. It's been a back-and-forth struggle, however, just learned my CA125 went down from 1000 to 720 in 3 weeks. Am taking Keytrude with Lenvima which is the standard for the PD-L1 (negative) biomarker. Note PD-L1 biomarkers can be either positive or negative. With negative, Lenvima is the important drug. Started on 4mg Lenvima, which was OK, then told to increase to 10mg Lenvima. With 10mg my CA125 consistently went down 60points every 3 weeks. Side effects were terrible constipation, high bp, bleeding nose, sudden weakness &dizziness, fatigue and terrible dehydration which made my dry sinuses painful. Was told to stop and after 3 weeks resumed on 4mg. Much better! bp not a problem, constipation controlled by 5 teaspoons of organic olive oil with 6-8 Colace daily, I take tylenolCodeine#3 for hip pain which really helps, continuing with Vyvanse I've taken for years which really helps my focus and bp OK. Nausea better, take Biotene mouth spray and XyliMelts (they stick on gums) for dry and bad mouth taste probably from Lenvima when out for walks or shopping. Knew I was better when appetite and energy increased. Noticed that drinking lots and lots of water helped those sudden weak spells, keep reminding myself to drink water all day long. Initially wobbly on walks and chores but the more I'm active, the better it gets - so I push past the initial discomfort. On a organic anti-cancer diet. No sugar or coffee, use Stevia, sometimes Guave. No red meat, actually no meat. Lots of NON-GMO wild caught sardines in olive oil, garlic, brussels sprouts and other veggies and fruits. Simple cereals, organic bread without sugar, NON-GMO Almond milk etc. Sometimes I over-do staying up and doing too much which I feel the next day in fatigue and yucky feeling.

Anyway, with my recent CA125 decrease doctors say it's working. Oh, if especially unwell will skip Lenvima for a day. Usually, in between Keytruda infusions I may skip 1 or 2 days of Lenvima, to give my body a day to refresh. Always feel better the next day and I don't see that it's been a problem in my recovery.

Hope everyone is doing well. Tolerating this so much more than chemo or avastin. It seems to be the right treatment for me, possibly in combination with my anti-cancer diet.

I transferred from another hospital which continued to push Avastin for maintenance knowing full well Immunotherapy was an option. I hated Avastin and knew I couldn't keep on it. Negative reviews of Immunotherapy terrified me and I braced myself for another horrendous treatment. I'm taking very low Lenvima dosage 4mg, I know many take up to 14mg or more. Point is EVERYONE is different and what works for someone might kill another. But, still gotta try, work with it etc. I'm here to say that my Immunotherapy treatment of Keytrude infusion and Lenvima 4mg/daily is A-OK. I have happy days when I feel good and so glad to be alive.

Have you started the treatment? My mom is on this treatment as well for UPSC 3A following a fully hysterectomy plus six cycles of chemo. Wondering how you're holding up?